Clinical Trial E5103

Kim

Your story sounds similar to mine --I actually had every 6  month mammograms for 3 years when I first started getting them (due to breast tissue under my arm that they couldnt get  a clean picture of), then got the all clear Jan 07 to go annually, then in 08 the mammogram found the tumor (which I had felt a month or so earlier.)  It was small, but due to widespread dcis, I need a mastectomy.  Re-your shoulder mobility--go to physical therapy if you aren't--it really helps. I started 2 weeks post op (and I had immediate reconstruction) and I have full range of motion back. It hurts a lot at the beginning but it does come back. Find someone with BC experience though.

The chemo isnt so bad--you'll tough it out through the AC, but its only 4 times. I am partway through the extended avastin and my sinuses have cleared. up. You  might also get really watery eyes on the AC--more annoying than anything.

I also have 3 kids but mine are 14,11 and 9. I figure I need at least to get my youngest to college so I am glad I went for all the chemo and radiation. Almost done with radiation now. some redness and blistering and unsightly but not too painful.

Hang in there during the AC, it gets easier after that.

Hi all ; thought I would update ; I have six more weeks of Taxol, which includes my last avastin before unblinding. I will be unblinded on 2/6. I think I am getting avastin based on the SE, but ya never know until you know. My sinuses echo much of what you ladies have said - I wake up in the a.m. and spray with saline and takes some time to loosen up and start clearing. During the day, its not that bad, though my nose does run. I do get the bad headaches that seem to come and go; but every so often it is more like a migraine and really hurts my eyes. My trial coordinator thinks I am on it based on the headache pattern which he feels is consistent with his patients that have been on the trial. My blood counts have been fine, but day 3 after treatment I'm always the most fatigued.

I am prepared to continue on avastin with whatever options I am given. I try not to think about the downsides, whether side effects or unknowns. Yesterday I met a woman at the health club yesterday who works in a cancer clinic for colon cancer. She raved about the success they have had with avastin and discussed side effects also. She was reassuring and does believe this is the wave of the future treatments. 

Today I went to elelphant pharmacy and stocked up on healthy stuff - my daughter laughed at me, but I told her that at least I feel like I am doing something . (organic cosmetics, acai juice, herbal tea, etc)  I am interested in changing my diet now also - not quite sure where to start as I think I eat healthy, but want to target some things.  Have a book on cancer fighting foods, etc. Wont go too overboard, but just some basics.

Totally agree with  cjw on getting mobility back ; I started out with slow results, but finally have full mobility back and swimming laps daily is the best. (boyancy, variety,less resistance) I start rads in late February so trying to get the node area in better shape before the zapper.  I do have lumpy underneath skin, but rad oncologist said it was mostly scar tissue. The whole node thing is worse than the breast recovery. 

Happier New Year to you all -

Keryl,

Sounds like you are doing great!  Not much you can do about the fatigue.  They say exercise but the way I felt going thru it, exercise was not on the top when I was wiped out!  I am still having pressure behind the eyes.  For awhile there I had wicked watery eyes but that has gotten much better.  I found excedrine xtra strength worked the best for my head.  They told me Aleve, motrin or ibuprofen.  None took care of it like excedrine.  Does the swimming bother your port at all or shoulder?  I am just working on the lower body and doing cardio.  You must be getting excited to be hitting the unblinding mark and being 1/2 way thru taxol!  Good for you. Take care and keep eating the good things in life.

Carolyn

Thanks for your support!

I'm   bit achy today from the Neulasta shot I think (not as bad as yesterday), and feel pretty foggy headed.

Carolyn-thanks for the food sugesttions. I'll ask about the L-cartinine. I'm taking L-glutamine. Figured it could help with muscle aches.

kim

Debk55 - I must be strange, as A/C wasnt so bad for me, and taxol isn't that easy.  Day 3 on taxol I am useless, ache and feel overall miserable. I know I am in the minority on this one, so dont worry - but do know everyone is different. I also think taxol has more topical sides - itchy spots, nail beds are very painful, and I think I am even more constipated, if that is possible.

I am glad you were able to get started on T/avastin - it helps to have a plan and start moving through it. I will hope all goes well.

I am going to a wedding tonight and hope to do ok. I have a pretty scarf and new dress, etc and so on. Will be nice to go out to an event.

Carolyn, swimming isnt so bad on the port but a few times the strap rubbed on it - oww.

As for the shoulder it feels tight, but loosens and that is why I think swimming is good. I cant advise butterfly as that is hard on shoulders normally - I cant swim it well anyway. I alternate breast stroke, back stroke, freestyle, side stroke...then do some water aerobic moves. also stretching out in the pool feels great. I live in CA but it is an outside pool at our club, The water temp is about 80 - 82. degrees.

have a good weekend everyone.

Hello,

My name is Lauren.  I am 31, diagnosed with breast cancer in October.  My dad and I have been reading this forum and it has been very helpful!

I have invasive ductal carcinoma, grade 2, hormone receptor positive and 1 lymph node positive.  I was recently informed that I am eligible for E5103 and I am trying to decide if I should participate. 

Is there anyone out there who is in their early 30s and participating in this study? 

I have no children now but would like to have children in the future so fertility is a concern re Avastin.  Also concerned about possible side effects such as 10% chance in clots and heart attacks.  Any input that you can give would be much appreciated!

Many thanks,

Lauren

Lauren,

Hi there.  I am 43 and began treatment at 42.  I have to tell you as far as fertility Avastin is the only worry.  I was thrown into menopause by my treatment and am still there, onc things its going to stick.  My onc said it was due to the Adriamycin but I think its something that can happen with any of them.  Since you are ER+ I'm not real sure on the implications of all of that.  Have you talked to your doctor yet?

Teresa

Hi all - I have finished the AC and the Taxol --yahoo!  I thought the AC was brutal...the Taxol wasn't so bad in the beginning but toward the end I was pretty tired.  My most significant SE with the Taxol was the bloody nose and now my nose is sooooooo sore.  I got a humidifier which helps a little-saline spray helps some-bacitracin up the nose is sometimes helpful too.  I live in the NE and the heat indoors is pretty drying. 

I have only had one Avastin only treatment so I'm not sure how just having that one drug will be.  I have my second tx on Wed.  I do seem to have a little more energy, but still get pretty fatigued by late afternoon.  Has anyone else experienced a big increase in blood pressure?

 I start radiation next week.  I'm going to start exercising regularly and see if that helps.  Anyone have any comments/suggestion for radiation?

Keryl - I had the same experience with Taxol - day 3 and I was useless.  I also had bad headaches which included pain in my eyes.  My vision is somewhat different - onc said not to go the eye doc for new prescription as 3 months or so of being off chemo will show improvement in vision.  It's tough because I really like to read and sometimes it's hard.

Debk55- I thought the Taxol was a lot easier than the AC - I found it helpful to still take it easy and rest as much as possible.

Brena - I don't know your whole story but I know you've been on the trial, finished, and still feel crummy.  I also have head pain, dizziness, twinges, vision problems...not sure why.  The head pain was so much that I had a brain MRI.  I have had so many tests and nothing to explain.  I think it's stress and emotional reaction to the whole experience - I'm sorry to hear your mood isn't great...but that's understandable.  You have been a great support to many of us over the past six months.  I'm glad you are making time for yourself.

Lauren - sorry I can't help you.  I'm 50 and happy that the chemo pushed me into menopause.  I know there are some younger women in my wellness group that finished treatment and have restarted their periods.  As far as the concern regarding your heart...one thing about the study is that you really get a lot of attention and monitoring that you might not get with typical treatment. 

Is there a support network where you live like Gilda's Club or something where you could meet other breast cancer women.  I've found it really helpful to hear about how other women have struggled with and made decisions. 

Brena,

I can tell you that I am also having some difficulty sleeping. The other night I was up til 2am because I refused to take anything for sleep.  The next night I was also up late because I didn't want to take anything.  I may take a melatonin tonight since I have to work tomorrow and the weekend.  I'm glad you are doing better w/the port out.  I am a little nervous about it healing.  The port is located where my seatbelt rides across my sternum.  I hope the healing process doesn't take toooo long.  I also think the blurry vision has to do w/the chemo.  I am getting it on and off. More on!  I have a hard time reading the label of meds for the kids that I have them read it to me. I don't wear glasses and its driving me crazy not to be able to read the smaller print.  I would have to agree w/Keryl in that I no longer am reading books because things start to get blurry and my eyes get tired.

I have gained WAY too much and started the gym last week but have not done anything this week and tomorrow is Tuesday!  I just got a call that my best friends mom passed away and the wake is Thurs night and funeral Friday.  So there goes 2 days of gym time.  I will get the gym in on Saturday.  My hubbies mom is still in the Hospital but is doing very well and will probably get out w/in the week.  Well, I think I will try going to lala land.  Arm is bugging me (partial lymphedema...nothing major but another ache!).  Take care and take some thera flu or maybe a hot toddy.  Remember Spring is around the corner.

Carolyn

I don't know how you do the 2-10 shift.  I guess i am so use to getting up early to get the kids going that I would be asleep at 9pm.  Inregards to blood work, I don't think it tells a lot about what's happening w/cancer cells.  I think the blood work would have to show something out of wack in order for them to warrant more specialized testing for cancer.  I would love for someone to come up w/a blood screening for cancer.  Wouldn't that make life a lot easier.

OMG. My finger nails have just started to ache and burn. sometimes I cannot even type on computer, make my bed or pet the dog.  It wakes me up at night and makes me feel like such a baby. It REALLY hurts. I have been putting tea tree oil on - hoping to avoid the dryness, but nails are starting to have little ridges. Is this the taxol? I guess it is. 

I get my # 11 of 16 total sessions on Thursday. I spoke to the radiation staging people today and the nicest visual imaging consultant - going to give me 3 sessions on that - not normally my thing, but going to do it.  will start rad 2nd week of Feb. Right when I get unblinded. I am pretty excited about that , but pacing myself as I know it may not be true. And if it is, it still may not be for anything - does anyone feel that way? as if you get avastin, it may not make a difference anyway so what would I be so excited about? in fact, could be the opposite when considering SE? Sometimes I wrestle with that, but overall, very pleased that I am in the trial and hoping all efforts come together.  

Keryl,

I can feel your pain.  My nails hurt to the touch but did not have the same problems that Brena had.  I had rigids on my thumbnails only.  I never lost any while doing taxol.  I did loose 2 after I was done treatment (it was like 3-4 months later).  I lost my pinkie toenail and one of my big toenails.  The big toenail got kinda black under the nail so I don't know if I hit it (which I might of).  No infections though.  I hope you are not doing dishes!  That's one area I stayed away from.  I did not keep my hands in water for long periods.  Longest would be taking a shower.  It's good to know you are on the downside!!  Remember that we are all making a difference in the lives of ourselves and others who may have to travel this road.  Hopefully we can make that road shorter.

Carolyn

Kim is finally "recovered" from her mastectomy enough to start chemo.  She should have her tests in the next week to confirm her eligibility for the trial.  She's 80% sure she wants to do the trial.

The "good" news from the last surgery is her margins were finally clean and the none of the additional 13 nodes were positive. 

She will probably start chemo in the next two weeks.

Brena & ALL,

I am not working my onc said maybe to try to go back in Feb if my hbg gets back to normal that is when he said the AC should be mostly out of my system. I will keep eating the spinach and taking the B vits. The Taxol did give be bad bone and muscle aches advil did not help had to take 1/2 of a vicodin every 6 hours for a couple of days. I am feeling pretty good today and I go back for my 2nd taxol tomorrow.

My daughters are 17 & 27. The 17 yr old (Kara) is a junior in high school,she is a great kid and an A student and plays basketball and soccer. I have not been to any of her games as the Ac had me really wiped out. I am going to try to go to her home game on tues now that I know what to expect from the taxol.  My 27 yr old (Kristen) lives in chicago and is finishing her second degree in social work this may. Her first degree was in photography. Quite a difference in her field of choice for work. I hope she will be happy in the social work field she will be almost 29 before she gets her masters and starts working. I think the social work classes helped her and me cope with my BC.

Thanks so much Brena for being here for all of us you mean alot to us. And our dx are almost the same.  Blessing to all, Debk:)